What has been your biggest struggle dealing with migraine as an invisible condition?

Community Answers

When people say insensitive or narrow minded things “its a girl thing”. I had 27 migraines in a month once and still had a coworker say it was a “cycle” related thing. I once had relatives show up after I canceled plans, then laugh that I layed on the couch while they hung out in the next room. To add injury to insult (yes, I know that usually goes the other way) they were loud, turned lights on and brewed flavored coffee. I was on the couch too sick to get to my bed and then so much sicker after they left.

Hi, I find the whole migraine problem very upsetting because unable to live a ‘normal’ life whenever my partner suggests going out somewhere I have to say lets see how I am nearer the time, he has got used to the same reply but thankfully knows my suffering as he has had migraine himself although he does not get them continually as I do. The hardest thing was going to work, did love my job and was always praying I could hold off the pain to get through the day, good days were few and far between, workmates never really understood and felt picked on quite often if had time off, my husbands Aunt told him ‘ you know people say they have a headache if they don’t want to do something’ his reply was if that was the case how was I able to make myself physically sick, she then said oh does she have sickness with a migraine, he said she does and would never make up silly lies like that, he never had much contact with her after that he was very angry. The migraines for me are a fuzzy zombie like feeling and very unsteady and trembly thats when I’m able to get up, a stranger would think I was drunk, have to keep my body warm and my face cool don’t know why that helps but it does, the pain becomes absolutely unbearable but soon after being sick the pain eases then I’m out of it and sleep, when I wake up feel very hungry and want to eat lots, it takes another day at least before I can walk without feeling dizzy. Wonder how can anyone really understand unless they have one themselves, some people I know have never had a headache, they have no idea how lucky they are do they.

My biggest struggle is trying to work with having chronic migraines. I have my own business so it’s a very difficult choice to just close up shop when I’m sick. I don’t have any employees to cover for me. I am better at arming myself with meds and knowing when one is coming and when to take meds to cut it off at the pass. Other times, there is literally nothing I can to do help the pain and fatigue.

I find I stay away from getting to know people and I don’t tell anyone about my migraines unless I have to. I have dropped friends because they can’t, or refuse, to understand what it’s like to live with migraines. I have been told many things through the years, as I’m sure everyone here has been. Some of my ‘favorites’ are, take a hot shower that always helps my headache, you need to learn how to handle stress better, you must have a low pain tolerance, it can’t be that bad and have you tried Excedrin Migraine. I had a neurologist, she specialized in migraines, tell me I didn’t have migraines I had a bad marriage. Then she looked at the MRI of my brain (I think that’s the scan) and told me it showed evidence of long term, severe migraines. I never went back. My own mother asked me why I still had migraines. I think we have a hard enough time staying positive and then the people in our lives throw these things at us. My Grandmother and Dad had migraines, 3 of my children have them. I try to be the best support for my children that I possibly can be.

When I have daily or almost daily pain, that clearly is the worst. I cannot function. But when the attacks back down to 2 or 3 a week, and I look up after 6 months of almost daily pain, I notice I don’t have any go-to friends. The friends I spent time with before–well–I cancelled on them a lot, and sometimes their question of “how are you doing” was answered with more detail than I should have given. I feel I am more conscious of grace from lying in bed and listening to affirmations, messages, and sermons. However I cannot plan more than a few hours in advance, even when I am having a good week, cannot take trips with my husband–who has retreated to watching a lot of sports. I cannot go out to eat because I have so many dietary restrictions I cannot eat at a restaurant, and if it is at all noisy or if there is a fireplace or in the hot sun, I cannot go there either. So in the end, it is the isolation that is getting me.

Even people in the healthcare community do not understand what it is to live with chronic migraines. I have to educate intake nurses at my regular doctors office, the dentist and hygentists, optometrists. I understand the layperson and trying to explain it, but I guess I just assumed most nurses and doctors would have some understanding.
If I get a full in for my regular doctor, I have to go over history, answer questions, deal with textbook questions and their expectations of textbook answers. I am on my 3rd neurologist and he’s butting heads with my husband, who just wants a prescription for me to try cefaly, but the doc wants me to stay on at least 6 months a drug that adds to my dizziness and nausea.
It’s a battle, not just to get up everyday and work through home and work, but to get treated for anything.

My migraines are triggered by smells. I had to quit my job in 2013 because the medical practice I worked for could not give me a scent free work area. At this point I am at home and only go out for doctor or dental appointments or tests scheduled by them. Even going into stores will cause a migraine because of all the scents of people, either perfume, cologne or even the horrible dryer sheets they use on their clothing. If I have an appointment I then try to get groceries and do what I can before the migraine and nausea and vomiting gets to be too much and I have to return home. Even going outside in our area will cause a migraine due to people burning leaves, brush, etc and the horrible dryer sheets people use that are vented to the outdoors. We recently got new neighbors, both of whom smoke and are so scented my husband knows exactly when they open their door and come outside when he is outdoors working or mowing the lawn. How do you educate people who are so ignorant to the health issues of all the scented products they use??/

Healthcare community – sometimes THEY are the worst. Doctors often have a cookie cutter response to migraine. They have their favorite prescriptions that they dole out, then when it doesn’t help you, they throw up their hands and say – “Well there is nothing I can do to help you.” I have had migraine for 40 years now, I have seen at least 7 doctors in my hometown in SW Ohio (Some were bonafide quacks.) I have been to the Diamond Headache Clinic in Chicago. I left there because the doctor went on a leave of absence (w a legitimate reason) and the replacement was useless, then they had the motherlode of “new computer” problems. I then went to the Michigan Head Pain & Neurological Clinic. The doctor there seemed to have his hands tied by the clinic director who must have had a prohibition on prescribing the Cefaly device. They too had their favorite prescriptions & were pretty inflexible. I finally ended up with another doctor in Dayton. The jury is still out on his practice. I have been to the ER a number of times w very good, responsive doctors all they way to a doctor who must have given me a placebo. He discharged me, to which I told him “I am still in pain.” He retorted “I know, I didn’t give you enough to make your pain go away.” and sent me home. The Health professional who takes the cake is the ER nurse who was wearing perfume (quite a lot). I asked her as soon as she hit the door “Are you wearing perfume?” She snottily said “Yeah, is that a problem?” with all the charm of a turd. I said “yes, it is.” Her snotty comeback was “Well you’ll have to go to another room to get another nurse – this is MY room!” ALL health professionals should refrain from wearing perfume or aftershave because they will come into contact with people from all walks of life and you never know who has a sensitivity.

When doctors, people from social security, insurance reps, etc call me a liar because they’ve never heard of a case like mine (I have severe chronic light sensitivity, horrible sound sensitivity… I can’t leave my house or turn on any of the lights without getting a migraine.) It’s bad enough that I have to find a way to endure the isolation and pain, but to be called a liar on top of it.

When I was still “well” enough to drag myself through work even though I missed a lot and often was in a migraine haze, my supervisor telling me after that first awful year I’d been so horribly sick that “this” (you know, me having a debilitating invisible disease that left me in terrible pain every day) wasn’t going to be acceptable next year and I was going to have to figure out a way to be at work every day and do 100% of everything without accommodations. (They had me transferred over the summer.)

Thank goodness you were able to transfer. I had a boss a few years ago whose office has a reputation for being a revolving door of people leaving: a total of 13 people since May of 2012 and the office only has 15 positions. I was one of the lucky 13.
He used to suffer from migraines as a child. You would think he would be understanding. Not a chance. He berated me more than any other boss I have ever had. It was like a reformed smoker who loathes smokers more than the general population. Once I called in sick with a migraine a day after I had been out after spraining my ankle. The painkiller knocked me out, meaning I couldn’t drive, let alone work. When I called in a 2nd day for having a migraine, he got verbally abusive. But we work for the federal government and it is nearly impossible to fire someone, so he gets away with his guff.

It frustrating that people can’t even fathom what kind of pain we deal with constantly. I’m a chronic migraine sufferer. Even if you try to describe it people can’t understand. As Naomi said I have family and friends who can tell just by looking at me how much I’m suffering. The people near and dear to my heart understand but sometimes I feel so alone.

Thanks you again JOleen1966 for sharing your thoughts on this topic too! We are so happy that this site has helped to provide you with some comfort. Pleas always feel free to reach out for support…we know and understand what you are going through. -Joanna (Migraine.com Team)

Agreed. No one who hasn’t had them understands. I actually had ONE boss who could look at my face in the mornings and know what kind of pain I was in, only because he had migraines too. Everyone else seems to think that it’s “convenient” or I do it for attention. My partner understands, which is awesome, but even they don’t have the first hand knowledge. And yes, those Excedrin commercials INFURIATE me. And something i noticed: The “migraine” formula of Excedrin is EXACTLY the same as the regular one. Look at the ingredients, it’s literally the same. Same amount of acetominophen/aspririn/caffeine. A rip off, for sure.

Nobody really understands that the non-pain symptoms are almost as uncomfortable as traditional pain and that migraine pain is not traditional. They don’t understand the fog, the sound and light sensitivities, or any number of other things and that they’re always present in some form or another. I actually heard a family member tell another family member that my headaches “seem very convenient.”

I think my biggest struggle is the lack of understanding of most of the world. Only those from our “planet” really get it. And I think the biggest contributor to misunderstanding is the Excedrin commercials.

Hi there Lori,
Thank you greatly for sharing your thoughts on this topic. Those in the migraine community truly seem to be the only ones that truly “get it” and yes…the Excederin commercials sure have aided in stirring up some controversy! Many would certainly agree! Take good care, Joanna (Migraine.com Team)